Few people in America have more challenging days and nights than Pat Weidner. She is in her early 60s and moved to Las Vegas several years ago with her husband, Leo, who is now in his early 70s. Of course, they bought at the top of the market and have watched their home's value sink and sink further underwater. Never financially flush, their modest pensions don't go very far.
All of this pales next to the odyssey the Weidners have been on since Pat first noticed in late 2008 that Leo, a former math teacher with meticulous habits, was putting family records in the wrong files. Since then, Leo's life has been a series of strokes, frequent hospitalizations, and a roller-coaster ride into and out of dementia. But mostly in.
Pat is Leo's nearly constant caregiver. Added to this stress, she says tearfully, is the sorrow of seeing her best friend vanish in front of her eyes. For the better part of two years, Leo did not talk at all and was largely unresponsive to his surroundings. But while he is gone from her in many ways, there are moments when "the real Leo" returns to her. "I lived in a world of silence for two years," Pat says. "But now he can talk, and I can have conversations with him. He has some recall."
Determined to continue living her life and to help Leo as well—"I want to keep his mind alive," she says—Pat has ventured out regularly from her home to take Leo on trips, including several beach vacations, and even a cruise, which she highly recommends. Leo has difficulty walking, is incontinent, and has trouble knowing when he has begun or ended his bathroom trips. Pat has become fearless in seeking help and telling service workers and attendants about Leo's condition and needs.
Traveling under these circumstances is not for the faint of heart. And it's certainly not suitable for many of those with dementia and Alzheimer's. Leann Reynolds is president of Homewatch CareGivers, a franchisor of caregiving services based near Denver. There are more than 200 Homewatch franchises in three dozen states and several foreign countries, providing at-home care and specializing in dementia care.
Caregivers "really need to assess their own limitations" before traveling, she says. "If they are easily embarrassed, or if they are afraid to say that their loved one has dementia, then it may not be a good idea to take their loved one on a trip."
"But if the doctor says your loved one can travel, and you have the right attitude, it can be a rewarding thing to travel," Reynolds adds. Family gatherings can be especially memorable, and may trigger comforting memories and emotions in dementia sufferers.
Based on the experiences of franchisee caregivers who accompany clients with dementia on trips, Reynolds has developed the following travel tips and other things to take into consideration:
Anxiety. People with dementia are often easily stressed and highly anxious. They may obsess over things they cannot control and worry endlessly about the most simple tasks. It is not usual for a dementia victim to want to pack a suitcase before leaving the house at any time, even for routine local errands. As a result, travel plans and details should be carefully shared by caregivers. "You don't talk about the trip much before the trip," Reynolds advises.
Planning and anticipation. Careful planning is essential. Try to avoid travel during holiday periods and other peak times.
Controlled environment. Seek out travel experiences and venues that help you control the environment surrounding the person with dementia.
Extra time. Nearly every facet of traveling takes longer when attending to the needs of a person with dementia. Give yourself lots of extra time.
Be flexible. Don't be surprised when things don't go the way you'd expect. Roll with the punches and stay flexible.
Help. Even if you have the help of a paid caregiver when you travel with someone with dementia, additional help is essential. If you fly, expect to call on airport and airline attendants. If you stay at a hotel or resort complex, the staff will need to be informed and probably involved in providing help to you and your traveling companion.
"Service workers are not necessarily trained to deal with the person as well as our caregiver or the primary caregiver," Reynolds says. "But my caregivers have always reported back that it seems to be that when these people are aware of the situation, they are calmer and bit more attentive."
Pat Weidner does all of these things and then some when she travels with her husband. She always gets a wheelchair for Leo in the airport. She uses curbside flight check-in to avoid the crowds and stress of ticket counters and lines. "The wheelchair is right there," she says, and wheelchair attendants will help with bathroom needs as well. "A lot of them will stand outside [the restroom] and wait for him," she adds. "It's just such a relief, and makes life so much easier."
The Weidners' cruise was carefully planned, including selecting a cruise line with a reputation for serving older travelers. Being on a cruise ship, Pat says, provided a controlled environment where pampering travelers is the norm. Predictable meal times and the same set of table companions helped.
Pat even took along her mother and father, then 83 and 88 years old. "We never got off ship because that would have been too much for him," she recalls. "Everything I planned for was to make things easy and quiet."
"We sat at the timed dinner each day because our servers knew us, and knew of his situation," she explains. "I always limit his choices. I make his choices for him, because even looking at a menu just throws him into a panic."
"You've got to keep a smile on the outside, or you'll lose your friends, too," Pat reflects. "Your good day is a lot different than their good day ... You cannot be embarrassed by your life; you just live it. If we can share and help other people," she concludes, then telling her story is worth it.